Last Friday I was standing in the cramped lobby of the gym, chatting with another dad and waiting for Henry’s Tiny Tots tumbling class to end. As we talked about our three-year olds and kids in general, I mentioned that I have a son with autism. “Oh,” he said with an interested expression on his kind face. “What kind of autism does he have?”
I stammered for a moment and tried to think of how to explain Jack and his autism, but just then the weary-looking gymnastics instructor opened the door and released our exuberant preschoolers. The father and I were distracted with putting socks and sneakers on squirming chubby feet, and I never did answer him.
I am no stranger to questions—since Jack was a squirrely toddler who fixated on vacuums and barely spoke, people have asked me what was wrong with him, will he get better, will he talk. Through the years, complete strangers have asked me what it’s like to have a child with autism, what it’s like to live with someone who can remember the exact date he ate a hotdog in 2009. For the most part these queries are well-intentioned, and I’ve never minded answering any of them.
But in eight years, I’ve never been asked such a beautifully poignant question, and I considered it for the entire drive home from gymnastics: what kind of autism does Jack have?
Research shows that people with autism generally share some common characteristics related to speech delays, impairment in social interaction, and a tendency to engage in repetitive behavior. It’s represented in the form of a bell curve, with some cases more severe than others.
In 2005 Jack was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). But to most people, this diagnosis means nothing. I’m Jack’s mother, and it’s nearly meaningless to me—it’s little more than a label stamped over and over on massive amounts of forms, paperwork, and education plans. It’s a box I check before his developmental appointments and pediatric reviews, but it hardly describes the kind of boy he is or the autism he has.
I have never had a conversation with my son that lasted longer than three minutes, because he has the kind of autism that limits his ability to communicate, to express himself, to be heard. He searches for words the way we might search for the proverbial needle in a haystack; slowly and painstakingly.
He latches onto subjects, from cars to countries to the color of people’s shampoo.
Regulation is a key aspect of Jack’s autism; he works very hard to keep control of his body and movements. When his body is calm, his mind opens and his heart engages, but minor physical changes like a hangnail or a loose tooth can send him into a tailspin. He retreats inside the labyrinth of his mind, and we cannot reach him until the source of his distress is resolved. Until the hangnail is clipped.
He doesn’t like to look people in the eye.
Jack doesn’t have a problem with different fabrics or tags on his clothes, but he has a sensitive palate and eschews foods with wet or slimy textures. He tends to roll parts of his meal in between his fingers to test their consistency before he puts them in his mouth. It’s really charming, especially on taco night.
He doesn’t flap his hands or twitch his fingers or hum. Instead, my child of autism gallops and sprints and jumps to soothe himself, to quiet the steady march of invisible ants up and down his body.
And music. Music is the very air my boy breathes. He is not discriminating; he’ll listen to anyone from Andrea Bocelli to Nicki Minaj, anything from classical to rock. Right now he favors Taylor Swift and Paul Simon. Every once in a while I catch him tapping his fingers to the rhythm, but he rarely sings out loud.
He’s wary of people. And he’s even warier of dogs. But his three brothers and flowery sister are his lifeline, his connection to the world beyond our home. Because of them, he tries things he might not otherwise, things like karate and waterslides and slimy chocolate pudding.
His kind of autism lets him see the days of the week as bright explosions of color.
Jack does not excel at math. Instead, he prefers words and spelling and language, and he has a keen awareness for subtleties in pronunciation and diction. “Mom. ‘Iran’ is said ih-rahn. Not I RAN!”
A lot of people ask if Jack is high functioning. And I usually shrug and tell them I don’t know. I mean, he can toast his own waffles for breakfast and work every electronic in our house, but I’m not sure he’ll ever be able to pay a mortgage or father a child. He can tell you what day of the week his father’s birthday fell in 2007 but he doesn’t understand that you shouldn’t ask people when they think they will die.
But miraculously, beautifully, his autism allows him to grow and to learn, to reach beyond the limits of his confining bell curve. More and more his gaze meets mine during our brief conversations, and I see a twinkle in his blue eyes.
It is the kind of autism that gives us hope.
I’m really looking forward to taking Henry to gymnastics next week, and hopefully I’ll get a chance to chat with that dad some more. Hopefully he’ll ask me again what kind of autism Jack has, because this time I’ll ready with an answer: he has my very favorite kind of autism in the whole world.